Hidradenitis Suppurativa Support Group
Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is rare, long-term skin condition that features small, painful lumps under the skin. The disease manifests as clusters of chronic abscesses or boils, sometimes as large as baseballs, that are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation,...
This disease is ruining my life before it even begins.
At 17 I should be excited to hang out with friends, get a job, graduate high school, but at this point its hard to do anything. I can't go out longer than a couple hours because I can't bare the pain of sitting around or being uncomfortable and just wanting to lay in bed. I have so many 'sick days' it is affecting my school and work. I can't wear a bikini with my sister and friends. I can't wear a tank top for fear of lifting my arms in public, I can't go swimming because the chlorine affects the skin. I can't go out during summer because I can't sweat and I will pass out. I can't work out for the fear of over heating. I can't change in front of people. I can't stay in relationships. This life is full of things I can't do.
I despise the looks of people who happen to see my scars and bleeding puss filled bumps, for lack of a better word. The worst things- the question, "what is that?" or the "Ew" and "Uhh"s. The time I was getting intimate with my boyfriend in the day time and he poked a lesion on my groin and asked if I had an STD. The moment when blood leaks through your shirt or pants in public. Or when my 5 year old niece told everyone at a family gathering auntie has gross purple and red things on her arms. Luckily I can blame most of it on my severe eczema.
Chronic physical and emotional pain. I am battling a skin disease that is getting the best of me. I feel like my body is shutting down. I have no hope for my future because it has been impossible to be happy. No one understands. My own dad thinks its just acne like my older sister had and it can go away if I wash more. My sister doesn't want to look at it and has to walk away when I take my pants off. She says she will throw up when she looks at it. My mom doesn't understand exactly what this was doing to me and thinks her homeopathic remedy's and prayer will cure everything.
I feel as if I can't go on. I gave up last night. I wrote out my pain and suffering, grabbed a knife and sat in the bath tub. I'm sure you can conclude the rest. My mom and sister saved me. Now I am trying to do everything I can to go on. They are the only things I have to live for. I am miserable. But I promised them I would try. So here I am. Trying to make things better. I am trying to think I have a future that doesn't involve pain every single day. I will never be comfortable in my own skin. My hope is that I will find a treatment., scars will hopefully fade and some day HS will not take everything from me.
So I guess I am asking for advice. What do you do to make the physical pain go away? How do you manage the physiological pain? What drives you to go on with life? I am desperate, anything will help.
At 17 I should be excited to hang out with friends, get a job, graduate high school, but at this point its hard to do anything. I can't go out longer than a couple hours because I can't bare the pain of sitting around or being uncomfortable and just wanting to lay in bed. I have so many 'sick days' it is affecting my school and work. I can't wear a bikini with my sister and friends. I can't wear a tank top for fear of lifting my arms in public, I can't go swimming because the chlorine affects the skin. I can't go out during summer because I can't sweat and I will pass out. I can't work out for the fear of over heating. I can't change in front of people. I can't stay in relationships. This life is full of things I can't do.
I despise the looks of people who happen to see my scars and bleeding puss filled bumps, for lack of a better word. The worst things- the question, "what is that?" or the "Ew" and "Uhh"s. The time I was getting intimate with my boyfriend in the day time and he poked a lesion on my groin and asked if I had an STD. The moment when blood leaks through your shirt or pants in public. Or when my 5 year old niece told everyone at a family gathering auntie has gross purple and red things on her arms. Luckily I can blame most of it on my severe eczema.
Chronic physical and emotional pain. I am battling a skin disease that is getting the best of me. I feel like my body is shutting down. I have no hope for my future because it has been impossible to be happy. No one understands. My own dad thinks its just acne like my older sister had and it can go away if I wash more. My sister doesn't want to look at it and has to walk away when I take my pants off. She says she will throw up when she looks at it. My mom doesn't understand exactly what this was doing to me and thinks her homeopathic remedy's and prayer will cure everything.
I feel as if I can't go on. I gave up last night. I wrote out my pain and suffering, grabbed a knife and sat in the bath tub. I'm sure you can conclude the rest. My mom and sister saved me. Now I am trying to do everything I can to go on. They are the only things I have to live for. I am miserable. But I promised them I would try. So here I am. Trying to make things better. I am trying to think I have a future that doesn't involve pain every single day. I will never be comfortable in my own skin. My hope is that I will find a treatment., scars will hopefully fade and some day HS will not take everything from me.
So I guess I am asking for advice. What do you do to make the physical pain go away? How do you manage the physiological pain? What drives you to go on with life? I am desperate, anything will help.
I feel your pain, it is one that I know. I had this disease for many years before it was diagnosed appropriately. For years it was just bacterial infections until I finally was able to see a specialist and confirmed what I already knew - it wasn't just bacterial infections, there was something else going on that made bacterial infections possible... and more likely - HS.
It can be tough, I've certainly had my times when I thought that I'd rather die than not deal with the pain any longer. There are some things that work for some people with changing lifestyle. For some it is weight loss - though this disease is not a byproduct of weight by any means, some see remarkable results in terms of severity dropping from essentially having less tissue for these lesions and sinus tracts to bear down on and grow. Some have luck with moving to a gluten free diet, a low carb diet, vegetarian diets etc. I think the trick is to try things and see if something works for you.
For me, I keep myself grounded because I know there are worse things that could be. For example, I have a friend who has, and has known since high school that he is terminally ill. He has a disease that puts him in the hospital for weeks at a time on heavy doses of pain cocktails, fentanyl, morphine, oxycodone etc. If he sees 40, he'll be lucky and as much as HS can be a hindrance - I've lost jobs because of flare ups, I've had school interrupted.... He quite literally cannot do anything or make plans for much of anything. We have it bad, we sure do... but while things could be better, they can always be worse.
The physical pain, and it can and is severe - I've yet to find any method of making that better. The psychological pain, and that may even be worse than the physical pain - I just try to remind myself that I'm a decent dude. Or try to be. I've lost friends, I've closed myself off from the possibility of relationships for lack of wanting to reveal my scars and open lesions and questions about an std for where some of my problem areas are. I'm very sociable, but I've missed out on a lot of things and had friends think I was a reclusive antisocial type avoiding them or a hypochondriac making up some story about recurring infections.
It's not the easiest "cross" to bear.... but the key I think is hopefully talking to people who share the same affliction here.. I say hopefully because I'm very new here and very new to knowing what I have! Remaining focused on the positives of who I am as a person and knowing that it is the "content of my character" if I may paraphrase and borrow from Dr. King that makes me who I am, not a physical ailment no matter how difficult it may be to deal with.
I know I couldn't provide any real solid insights to help, but if you should ever need someone to talk with, I'll be your HS buddy for sure ;)
Keep your head up. It's tough, but maybe someday we'll be part of a test group for a new medication or procedure that leads to a cure or at least a way to control this dreadful disease.
I figure as much as HS can suck and gets in the way of a lot of things in life, it can't change the who I am from a mental, emotional, spirit level - I might look defective on the outside, but it would be worse if I was a mean, spiteful, hate filled person. It's sort of like going on a date with someone you've got the hots for and then you realize that they're horrific on the inside and it made that pretty exterior suddenly unattractive. So we've got things going on externally that are brutal, big whoop! haha . Now, when I have a failed relationship due to HS rearing it's ugly head, remind me of this please? hahaha oh man!
i am drinking turmeric mixed with milk everyday, i am using head and shoulders shampoo as a body wash to kill the bacteria which is working so good(do some research on head and shoulders) and gluten free diet.. i used to get at least 10-12 cyst a week and now it has reduced to 2... don't give up hope... keep researching.. u should definitely try the zinc supplement it has worked wonders for many HS sufferers ..
And I am taking 100mg of zinc everyday for the past seven months. It hasn't done much.
Sorry, a bit of a tangent...As far as the stuff that works....Well, it is different for everyone but I've definately noticed a difference when I take natural supplements to fight inflammation and eat healthier. I have to watch the stress levels because that triggers mother of all flares! Some of what I'm doing to help my other illness is helping to tame the HS. But I hold onto sweet, sweet memories like a great vacation or fun day with the family when my HS wasn't flaring. That gives me drive to go on. And thank goodness for my hubby, he has been fantastic to me these 10 years! He always compliments me and makes me feel so good about myself even after he has had to help me bandage or clean clothes. That's a positive for sure!
I'm 17,too. But i'm letting you know there is hope. I'm a senior now, and I getting ready to go to college. I know exactly how you feel, I've been where you have been. I tried overdosing many times. You CAN GET THROUGH THIS! I promise.
My HS was the absolute worst when I was a freshman, "supposed" to be your best year in high school, mine was NO where near. I was in 3rd stage as soon was my bumps started. I had HUGE wounds under my arms, my breast, my sides, and my groin.( plus it was worst because i was/am obese) I couldn't lift my arms at all, i walked at like 1/16 miles per hour, my wounds gave off the nastiest smell, it was sickening.
But you have to tell your family, they should be your biggest support system. Your closest friends also, they might we like 'what is that" but if they are your REAL friends they will be right by your side every step of the way.
The MOSt important thing is you need to find a doctor that specializes in HS disease to help you, my doctor is an hour away from me, but it was worth every trip, every dollar i paid to the hospital, and every ounce of gas brought. I have a quality of life now, even thou I did spend around a months time in the hospital .
You are gonna make it. Some day are gonna feel bad some better and some great. But choose something in your future to drive you. Like something that drives me is one day working at the hospital that helped me soo much, Vanderbilt Medical Hospital.
It takes a while, but finding a good therapist to open up to helped me. It took some trial and error with different antidepressants but now I'm balanced out. I also have to attend AA and NA meetings for my addiction issues.
Thats not even to the physical issue of the HS yet. Eventually my derm just got me on some long term antibiotics and pain medicine. Its how I live my life now. I really can't function too well without my pain medicine.....it sounds like you need to get a referral to pain management and get on some antidepressants like I had too. Your attitude and quality of life will greatly increase when your physical pain is diminished and the depression eases up a bit as well.
Its hard but I've had to learn to love and accept myself WITH HS. I cannot compare myself to 'normal' people. AKA my friends, classmates, ect;. I cannot keep up with normal people and in a way It makes me seem older and wiser I guess. But it is what it is. I spent many years during my early twenties trying to live up to everyone elses expectations of me. But ultimately I came to the place where I had to learn to just accept and be happy with who I am and what I can do. It was so tough. I'm 28 now and each day has new challenges as well as joys.
Normal people don't understand. Fuck em though.....you are who you are and that's just how it is.
It does get better once you make the decision to live no matter what. It will take time to get to the doctors and get the therapies you need. It takes time to get your meds in balance too. It will not happen over night so don't expect it to.
There's nothing wrong with having to get help.
Today I just accept who I am. I take it easy and don't struggle against life. I have a conception of God that I can do business with. I focus a little more on spirituality than I used to and it gets me by. But I'm not a bible thumper or anything. Also helping others is a great way to forget about your own problems. Remember there is always someone who has it worse. Giving people advice on this forum is therapeutic for me too. Cause I've been through what you're going through and I can offer advice so it gives me a sense of purpose you know?
You will figure it out with time.
My ass hurts and leaks still. I still deal with pain and the odors and everything else that comes along with HS. But over the years I've developed a system that works for me. I take about two showers a day and wear 3 pairs of underwear under a pair of basketball shorts under my pants. I used gold bond or off brand medicated body powder right when i get out of the shower to kill the smell. When I go to class I take a can of AXE body spray in my bad and have to go to the bathroom to clean up after each class but I've learned to do what i GOT TO DO. That sort of stuff used to fuck with my head but I'm still function and contributing to society.
Now I'm buying wholesale stuff in bulk and selling it on ebay instead of working. That way I don't have to really be out in public much and I set my own hours.
I'm telling you, if you keep trying you will find a way and life that works for you though its tough at times.
Hang in there
Love you,
Dus